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Early onset Alzheimer's is the worst! I know a gal whose husband was diagnose at age 54, she had to place him in a locked unit at age 56, and he passed away at age 60. Certainly not what she expected when she got married. He was physically aggressive and wandered, she was also up all night. I do think that some patients, even older men and women become more interested in sex with dementia. I have seen it as a nurse, an 80yr old woman all of a sudden wants to be intimate and her 84yr old husband just can't do it. So then she accuses him of having an affair. Or "chasing" all the other women they know. What a tragedy. I totally agree with the advice to find a support group. Also get some respite care. If your insurance won't pay for someone to come in, try RSVP, they can "sit' with your husband for up to 4 hours a week for free. (they can play cards or something with him to keep him busy). Also, see if there's an adult day care in your area. He could go there once or twice a week. I had a caregiver who took her husband to adult day care every Monday morning and went home and slept. She said that she needed it to face the rest of the week. If you find a support group, the other members will be great resources for you to find help. Maybe a church member can sit with him, maybe someone from his previous work. So many people would like to help, but they don't know what they could do. Call and ask.
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I know this thread is old but just ran across it. My father who will be 66 next week found out only about 6 years ago that he has Parkinson's with dementia. He was a well know successful attorney. He slowly began to not remember things during trials. MY siblings both work in his firm and tried to pick up his slack to keep the public from knowing. In August of 2104 one morning he was pretty lethargic and not responsive. Took him by ambulance decided it was a UTI causing problems. NOT the case! He has gone down slowly every since. In the past 3 weeks (August 2016) he has gone down FAST. He accuses my mother of having an affair- stealing his money. He knows my siblings and myself in and out most days. We had to hide his keys - and he confronts us about it - we told him he lost them. He still gets in lawyer mode and will question us like we are clients and he is working on a case. My mother is 62 and has always stayed at home. I work but live beside her so I can help as does my husband. Mt siblings live away and have a hard time physically helping. My sister handles all the legal and medical stuff that I don't understand. He gets very mad at my mother- she just can't have sex with him- just not the same person she says. No real reason for posting other than it feels good to tell it!! Hoping to not need nursing home but can't expect mother to do it all either .
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Thank you mbruffin1 and this is what I have been through. This was just a phase and new phases have come and gone. Thank you for sharing your story as it will help others like myself. Now he is indifferent to me, like I am just a piece of furniture but I still care for him. My husband is now very lethargic and gets sick very easily. His hissy fits have come and gone now. Stay strong your mother will need you.
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Thank goodness we have a grown son who lives with us too. I could not do this alone. I feel protected with another family member here. Also to sit with my husband while I continue to work. His Hypersexuality has diminished and he is quit docile now. Fraile looking 60 year old man. Who sits in his wheelchair and looks at papers all day long, not understanding what he is reading. Its sad and heartbreaking.
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upallnight ,
dont let your guard down . he may be reading about the recent voter fraud in austria , but eventually he'll correlate that with how he hasnt had a half a bedsheet sucked up his a** in just TOO D**M LONG ..
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Lol...I wish I had a wife with dementia that wanted sex all the time. I'll trade that any day for a healthy woman who doesn't want it at all. Ha!
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ctdc3000, having a spouse with dementia is a truly heartbreaking situation. I really don't think you'd want that.
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jeannegibbs, it was simply a joke. I understand the seriousness of someone having dementia...but it's still up to the individual. Some people are just built different. That wouldn't bother me at all. It's other aspects of dementia that would wear me down.
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All aspects of this awful disease wear me down. Caring for a loved one is exhausting. No offense taken towards anyone. We are all here to vent and support one another. His behavior has taken many changes since I posted this situation. It has not been easy. I continue to care for my husband plus working. His health is always touch and go. I have to pick and chose which doctors and appointments to take him to, he has so many! He is almost ambulatory now. The sex thing seems like such a long time ago but a big deal at the time. Thank you all for your support.
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I relocated to the area where I grew up to assist my mother. I am resenting this move. My daughter was taking care of my mother and grew tired of it and I told her I would move back to take care of her. Mean while I need to take care of myself and work. I've been doing some evening work, but that isn't enough for me. I have my mother going to a Senior Center 3 times a week, she can get herself dressed and out to the shuttle. This morning she was going outside an hour before the time of the shuttle and got upset with me when I brought her back in the house. I cannot have her outside in the damp cold waiting for the shuttle. I just needed a place to vent.
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Is he really "sex crazed" or just "a man" suffering from dementia ? Does dementia mean no more sex ? Should it ? What's a guy to do ? I"ve substained for over 20 years and I'm now 65 years-old. Not easy. Does a wife have any obligation at all ? I can't tell you how bad the feeling of rejection can be. Sometimes I just feel like going away, yes, going away. It's hard you see, very hard. Please consider my words for the future of your relationship.
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I just found this site and although my husband has Parkinsons and not Alzheimers, he is cognitively impaired. I literally do everything that is related to business or household. He was a brilliant businessman and during those years, he let me know how much better he was than I and for a long, long time, I believed it. I stayed home and took care of everything even if it was of a physical nature ....he has, in over 30 years of having an irrigation system, never learned how to turn it on. Since he traveled for work, I got up in the wee hours for hockey or spent the weekends on the road traveling for soccer games with the kids. He knows how to order pizza and to heat something up in the microwave. When he retired, I started making him take the trash totes out and put his laundry away...that is his only tasks still and he has been retired for almost 9 years. Anyway, we have gone through several stages or phases of his disease and various tries at the right balance of meds. I am busy. I try to maintain a social life for myself and I volunteer with animals and that is my happy place. He watches TV and naps hour after hour and day after day. He is at times fatigued but mostly he doesn't process information. He knows everything he learned through the years but after three years with an I-Phone, he still can't turn it off or on--he cannot not learn anything new. I give simple instruction on something and instead of filling the bird feeders on the deck, he will be in the garage or something like that. He drools, he shakes, his mouth hangs open a lot, his eyes pop out. He used to be tall and strong and now his shoulders are rounded and he is somewhat stooped over and usually his zipper is down. He follows me around and wants my attention. I explain that I have things to do--I always have things to do. We have two houses and I take care of both and do all the driving (second is two hours away in the country). I order all his pills, count them out for him, take him to all his appointments, fill out all the paperwork. I am high energy but I am no spring chicken and tonight after I went up and down the attic steps getting Christmas decorations down, he watched TV for two hours and then came outside to ask if I needed help----he really wanted me to come in and fix him dinner ! I have grown frustrated and resentful. I have gone to a support group through the Parkinson Assoc. but it is almost all woman and all I hear is their stories of how they take care of their husbands. Some of them even take a notebook out! They wear their caregiver title as a badge of martyrdom . I take him to a special PD class once a week. The wives who drive their husbands all sit together on the side waiting to give hubby a drink etc., and we talk about how to "care" for our spouse and compare their meds. Since my husband does nothing all day long but basically sit (the last few months he has decided he doesn't want to be in the basement but wants to be up in the kitchen/family room area by me) I know he is bored and lonely but I also don't feel he is "trying." There are things he can do and #1 is get up off that chair and do something. He listens to my phone conversations and then he gets things mixed up and will often spread things that should remain unsaid. In the mix of all this doing nothing, he wants sex. Today he said when I asked him to do something simple, that he wouldn't b/c I wouldn't have sex. I am going to be a bit graphic here---we don't fit together anymore and so we have to resort to an alternative to penetration. I am cringing the whole time b/c I too feel like this is somewhat of a stranger and he looks old and feeble and unattractive (he used to be so well groomed but no more). I feel bad b/c I am not attractive to him and no matter what I say or do to avoid a situation (believe me I never use screw or blow around him), he is always hovering around me. I don't want a divorce, I just want peace. He isn't bad enough to send to adult day care but I would really relish some time in my house where I don't feel suffocated. Most of our friends are still working so no one really has a frame of reference to understand how heavy everything is on my shoulders. I also have learned that no one wants to have Debbie downer around so it is best not to share b/c to someone not in my shoes, they don't understand. All the published articles I read give testament to going as partners against this terrible disease....never have I seen the sex topic brought up or the spouse that wants to retain his/her own identity. I needed to vent. Thank you.
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i don't want to have sex or be physically intimate, even kissing in a sexual way is something I don't want to do because I feel like he is a stranger and we don't have a shared life or partnership. It just feels wrong. But because he doesn't even accept his dementia I can't talk to him about my feelings. I am 53 and he is 64.
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That's rough on you, kth1964. Your husband is young to have dementia, too. Are you in touch with any support groups near you?
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No I'm not, because he is young and his dementia is rare, it's aphasia based then the support groups in my area aren't appropriate. It's a personal choice, I'm in it all day with him and don't want to go somewhere for support just to be surrounded by older, more serious and progressed dementia carers. This would be too much for me. I prefer to be with friends who don't know about it and I can act normal.
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I just feel terribly sad.
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Mm. I see what you mean. Don't forget that the caregiver community spans the full age range, though. Caregivers your age will more normally be looking after a parent or older relative, but even so. They still know what it's like to be gradually losing the person they love.

Well. The thing is, though, that even the rarer diseases still affect many hundreds of people. You may feel alone, but the reality is that you won't be alone; and it can help, not everybody but most people, to share your experience with others who really do understand because they've been there. Your husband's neurologist - or psychiatrist? Who diagnosed him? - should have information about relevant support groups for families and caregivers.

And, meanwhile, although you feel terribly sad, and please accept a virtual shoulder rub, your husband has dementia which he is angry enough about to want to ignore, and also a wife who - for very sound and understandable reasons - no longer feels able to be intimate with him. It isn't only you who needs sympathetic support based on informed understanding.

What is the prognosis for your husband's condition?

Personally, in the right circumstances, I'm all for a little judicious denial. I can quite see that spending the evening with people who don't have a clue what's going on helps simply because you do get those hours away, back in the normal world.

On the other hand. Are they all fair weather friends? Isn't there a one of them you can count on to stick around and support you when things get really rough?
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kth1964, in our island, we only have one support group. It covers everyone who is a caregiver - for a cancer loved one, an elderly parent with dementia or just old age, or grandparents who are guardians of young grandkids. We each identify ourselves and who we're caregiving for. We share the ups and downs. On my last caregiving's meeting, out of the whole room, only myself and another young caregiver have been experiencing black-outs. When I looked around the group, no-one understood what the 2 of us are experiencing. She's caregiving her dementia husband, and me with my stroke-bedridden father who is going down the senility road. Although we're both caregiving different kinds of patients, we are experiencing the same thing all caregivers may or may not go through....
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At least I am not alone. My husband is now 60 yrs old and does not behave like this anymore. I still abstain because he is just too sick. He stays mainly confused and does not start a conversation anymore. Our son still lives with us to help and I continue to work part time. My husband used to call on the phone and tell lies about me to anyone who would listen. (Our son and I having sex) He would tell doctors, nurses. his parents, brother, his pastor. He was so delusional. I also thought he might kill me and not remember it. He would rant and rave all night and I stayed exhausted. Seroquel helped with this. But yes I cannot get over his behavior and resent what he has put me through. I take care of him because he would have done it for me. I fight for him to come out of those awful nursing homes because I hope he would have fought for me. To top it off he suffers from epilepsy too. Sex is the least of my worries at this point. Thanks for listening and again its nice to have a place to vent.
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Forgot to mention last year my father in law who suffered from Alzheimer's walked out of his front door was missing for 6 weeks and found deceased. I had to explain all of this to my husband what happened to his dad. So heartbreaking. My husband was in and out of the hospital those weeks and I had to find the right time to tell him. It was heart wrenching! I never missed a day of work. The whole town was looking for my father in law. My sister died of ALS right after this, after being diagnosed 3 months before! I could not go out of town for her funeral because I had to stay here to care for my husband. Its been rough, but I am ok thanks to my wonderful children.
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((((((hugs)))))) What a hard time you have been having. I am so sorry for your losses and ongoing challenges.
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It's good that someone is bringing up the problems involving sex with a spouse who has dementia.....my husband always had a healthy sex appetite, and we had almost 50 years of a happy marriage. But his dementia has worsened to the point where that's all he thinks about is having sex with me. I am so turned off, it makes me very upset for him to even mention it. I feel like I am his mother or caregiver, not his wife any more. After a year of urinary tract infections, a catheter, etc. and having to take care of his cleansing and dressing etc. etc. , I have bowed out of any touching, feeling, anything to do with sex. I feel so mean most of the time when he brings it up, and makes me feel guilty. But I feel like I would be physically sick if we even tried anything. He hasn't been able to do much in that area for a couple years, but in HIS mind, he thinks he can. I'm so tired of the arguments of this subject, I feel like dropping him off at nursing home and leaving. I take good care of him, cook him all the good meals he wants, anything else but sex. He is 81 years old, and I'm 75. I think I upheld my marriage vows long enough....LOL......I don't know where this will end, but I'm really getting tired of it. Thanks for listening.
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I am so grateful for all your comments. Thank you to everyone that has shared their story. I identify with many. I find this such a difficult subject. My husband had a TIA in 2012 as we were burying my dad. While at the gravesite, our 14 year old daughter realized my husband had walked away from the grave.  She lead him back to my side. He was several rows away leasurely reading the tombstones in the cemetery. I immediately realized something was wrong. I drove like a wild woman to the ER. I lost my dad and my husband that day. The next five years consisted of severe bouts of depression, verbal abuse and intimidation, threats of suicide and demands for a divorce. My husband is gone and an imposter has taken his place. One of the most disturbing aspects of this disease is his fixation on sex. I try to express my love by treating him with kindness, taking care of his needs (in every other way), but I draw the line at sex. I will not be bullied into sharing myself with this shadow of my husband. I cannot. It breaks my heart.
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Wow it's been 5 yrs since I started this discussion! Alot has happened since. Tomorrow I will have my husbands funeral service. He was put into a nursing home last July and continued to go downhill. MRSA pnumonia got him. I am trying so hard to remember when he was not ill. It's been a long hard road. He was 61 and they told me he had the brain of a 90 yr. old man. IM so emotionaly exhausted I am taking a few weeks off from work. Now I can just do me.
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my husband suffers from frontal temporal dementia and tries to have sexual relations with our daughter. Any thoughts ?
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How old is your daughter? Is she capable of protecting herself? If there’s any way possible he could succeed in harming her you must take steps to protect her. I’m very sorry your family is in this position, your husband isn’t the person he once was, but daughter must be protected from this behavior
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He divorced me for another woman, literally took me to divorce lawyer and we filed!!! Been married 14 years. His fourth wife. Diagnosis is Dementia, mini strokes, Parkinson’s, Type 2 Diabetic since 30. Age now 63. Psycho, crazy family. Can’t get away. He is so sick and no family want him. Help!!
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Reading about this has done two things: put a great deal,of fear in me and also given me hope that I can somehow find help. Before dementia entering our lives, my husband and I had a healthy and happy sex life. But I came from a terribly abusive early childhood, which has made it so much harder for me to face the angry and hostile nature of his behaviors. All I see is a vicious stepfather who beat his wife and abused both of us. This is a deeply emotional,issue that I am not able to face with any kind of wisdom or understanding, especially because our past relationship was so honest and loving. I feel very. Fortunate that his behaviors have, thus far, not become sexual. If that happens, I will have to leave.
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I feel for each one of the individuals posting. I would say if it gets to a point when someone is angry and continuously causing problems and keeping the caregiver up all night it is time to look for other accommodations. I think what people don't realize is that the situation is very detrimental for the caregiver. What is if something happens and you cannot take care of this person, because of something they have done to you or from living under undo stress. Work with Senior services and see if there is a Assistant Living place that is trained to work with these behaviors. Go see the person and know that they are receiving the help they need and deserve and you live a peaceful life. Tomorrow isn't promised to any of us, so you must determine how you want to live this life and the best for the person you are caring for.
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Wow.
Just. WOW.
All of these stories have made me cry.
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